He was very kind to respond

His response:

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There are so many misconceptions about LDN that we could spend an hour correcting all of this ancedotal information. The problem is that patients do not read the literature, and offer their “opinions” as if this is true. LDN is a great example of the good and bad about the internet.

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LDN is an immunosuppressant – it works through the opioid growth factor – opioid growth factor receptor axis

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OGF (LDN) acts as an inhibitor of the cell cycle, increasing p16 and p21 in the cyclin-dependent kinase inhibitory pathway. We are in the midst of writing all of this up for publication. On a practical basis, you would not recommend an immunostimulant to someone with MS or Crohn’s Disease (we just finished a Phase II trial on LDN and Crohn’s right now – worked nicely).

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LDN should be fine for MS – with or without other therapy

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I suspect you will find that you will be tapering your patient off of other therapies very shortly, and having your patient on LDN only.

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Remember – use around 3 mg/day

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Start your patient with LDN daily – try it in the evening.

If there is disturbed sleep, switch to the morning (it will make no difference in efficacy)

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Skip’s Pharmacy in Boca Raton, FL – they are on the web – has excellent LDN (some compounding pharmacies do not use the right bulking agents and the LDN is weak or inactive).

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[PJ’s Prescription Shoppe in San Diego makes high quality capsules. And I do at times prescribe a suspension that is easier to adjust doses. The important thing is to use Avicel filler ( microcrystalline cellulose) and do not make SR sustained release capsules….ns]

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I wanted to add that OGF is the real, natural biological peptide and its mechanism is on native physiological processes. LDN is merely a tool to access and take advantage of the OGF-OGFr axis. There are other ways of taking advantage of this system as well.

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Secondly, OGF and LDN work nicely in combination with chemotherapy as well

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We have a great clinical study going showing that OGF and gemcitabine are a terrific combo for treatment of advanced pancreatic cancer. Patients on OGF alone have lived for 2 years, and right now we have a patient on OGF and gemcitabine who is out around 15 months – and is doing splendidly. We have a paper out on OGF and pancreatic cancer – Phase I. Another study, phase II, is in press in Open Access Journal of Clinical Trials – look for it.

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Another woman, lives close by me, who was an aerobics instructor and has MS, has been taking LDN. She has made a remarkable recovery and is back teaching aerobics. Her family donated $50,000 to our research in honor/appreciation for our discovery, and 8 months later (the other day in fact) she gave us another $50,000. We have a group of researchers now doing the science.

6 Responses to “Should LDN be used with other disease modifying drugs for Multiple Sclerosis?”

I have asked my Dr about LDN for my progressive MS and she believes it is jusst another hoax. I have been on Avonex, Rebif (can’t take interfurons anymore) then Navantrone for 2 years and Tysabri for 3. Now they are going to start me on Copaxone for lack of anything else to try. I am in a wheelchair now and only 53 years old. I have read so much about LDN and felt it was worth a try. My Dr says it is not even available for her to perscribe here in ME. What would be my options?
Karen

Bruce Cree, MD, at UCSF Multiple Sclerosis Clinic has done one study that he published and that I linked on this website. He is now planning a multi-center study based upon those positive results. If the next study is positive, that data hopefully then can be used to apply for a large scale study through NIH, which will allow for repeat MRI testing and long term follow up. He is very encouraged but good academic studies in MS must be long term and they are very very expensive. That will take years to complete.

Until then, low dose naltrexone appears to have minimal if any side effects and no toxicity that I have seen or heard of.

It must be compounded in these very low doses and that must be done by a good pharmacy with attention to the “matrix’ used.

Doctors are bombarded with claims people make for vitamin and herbal supplements. They are leery to use anything that has not been FDA approved or that may be off label and not widely used in medicine. My own patients with various types of intractable pain have had pain or both pain and inflammation reduced, at times to zero, with this low dose. That led me to research the internet and discover that MS patients all over the world have responded to low dose. Not everyone, but enough severe cases have responded. In the clinical research I did years ago in MS, I never saw or heard of such profound responses like the ones reported on the web for low dose naltrexone.

There is strong neuroscience on naltrexone since the 1970’s, much more in the last two years. Its action is at the level of the microglia, and changes in those cells are the hallmark of pathology in MS. But double blind, controlled clinical studies need to be done and it looks like Dr. Cree will be doing them in years to come as funding permits.

If I had MS, I would try it. Based upon my clinical experience with my own patients, there is nothing to lose in trying. Your difficulty will be in finding a doctor who is willing to help. Any doctor can write a prescription for a compounded medication. Persuading an MD may prove difficult.

It is true that the internet is filled with non-medical advice from MS suffers that offer their honest opinion. This is sometimes good, sometimes bad, but sites like these that provide information that comes from medical sources are always welcomed.

MS is unique in its way, and each individual follows a different treatment scheme. This means that works for some could not work for others. So, never take medication unless prescribed by your doctor!

The difficulty arises in using off-label medication. Naltrexone is a drug approved by the FDA, but not approved for MS. Any physician can prescribe it for any number of conditions, but ideally we like to use medication that has been tested with double blind, placebo controlled studies and approved by FDA for specific use. It will be many years before the multi-center studies can be completed as envisioned by Dr. Cree at UCSF. His study of naltrexone would not have been started without years of anecdotal experience by patients around the world.

In these low doses of 1 to 3 mg or 4.5 mg, it is nontoxic and safe to use. How do we know that? Because the FDA has approved it in doses of 50 mg to 400 mg for addiction, and our colleagues tell us there is no problem prescribing at 50 to 100 mg.

Any compounding pharmacy in the country can make it in these tiny doses. What is required is the physician who will write the prescription.

I take LDN 3mg nightly. I have noticed improvement but I still have many bad days. But it has improved my balance, muscle stamina and I think mood. I have been taking LDN for a year now. I still have quite a bit of spasticity and fatigue though.